Tag: Johns Hopkins

When my neurologist left Johns Hopkins, I was distraught at the fact that I had to find a new one. I knew it would take time. And I’m usually a very patient person, but I’ve been without pain relief for too long now. But I scheduled a new patient appointment with another neurologist anyway and was determined to wait my 6months.

This month is January. My appointment was supposed to be February 1st, which was no problem! I could wait a month, that would be fine. I will just do my over the counter routine and it won’t be too bad because it’s only a month!

Surprise! They call to cancel my appointment. My doctor is now doing inpatient only that month, which is so not anyones fault and I don’t blame them, but I’m still upset. The earliest they could schedule me was June 1st. As in 6months from now JUNE 1ST! Now, THAT I don’t know how I’m going to make it to.

I do have an appointment with the Nurse Practitioner near the end of this month, but I’m not 100% sure what she can do for me? Can she prescribe me new medications? Can she recommend me for the nerve burning procedure? I just need SOMETHING that will work.

I’m going to make a list of everything I want her to cover with me and bring it so I won’t forget anything. So far that list looks like:

The last time I was at Johns Hopkins, I got a prescription for Depakote. My neurologist had mentioned it to me before, but the side effects sort of made me not want to take it. So I have had this drug, just sitting in the bottle on my dresser. I look at it everyday when I take my other medications.

So far my other medications haven’t made a significant change in my pain level. But I am terrified to take the Depakote. The side effects he mostly pitched to me were weight gain, hair loss, and acne. Now I already have acne, and it seems to be mostly under control for the moment. Earlier this year I had a really bad bout of cystic acne which sort of faded away into this more manageable version which can be covered by makeup as long as I don’t mess with my face. I don’t want to gain weight or lose my hair either!

But then there’s the possibility of being migraine free. Of course I can always stop the drug once I notice a bad side effect. But what if I don’t notice until it’s too late? I don’t keep track of my weight all the time, and I know it sort of fluctuates. But I don’t want to get to the point where my pants aren’t fitting anymore! And I love my hair, I don’t know what I would do it more of it falls out than what already does. And the acne, I don’t know if I can go down that road.

For now, the Depakote will sit on the dresser, taunting me every morning and every night.

I have been seeing Dr Jason Rosenberg at Johns Hopkins for maybe 2 years. He is the only doctor thats ever immediately recognized my visual snow as a separate condition than my migraine. And he has left the Headache Clinic to move to Kaiser. Which is not the insurance that I have. So my chances of seeing him now are pretty much nonexistant. When he told me, at my last appointment, that is was his last week, I sort of felt let down. He has been a damn good neurologist to me. And I wish him the best.

Now the search is on to find a new neurologist. I still have a treatment plan from Rosenberg, involving nerve blocks and some procedure where they might burn the nerves in my head. I’m sure the other doctors at the headache clinic are great, I just hope I can find one that will go out of their way for me, like Rosenberg did.

For the first time in a long time, I am feeling somewhat hopeful. Although I am also afraid this was some sort of fluke.

Thursday June 23rd 2016, something changed. I was scheduled for my 2nd consecutive round of Botox injections, as well as trying an occipital nerve block for the first time. I was nervous. I sat in the waiting room, worried about passing out or something horrible happening. My last session went fine, no dizziness or anything, so there was no real reason to worry this time.

As I laid face down on the table, counting fours as I breathed in and out, a few things happened. (1) I realized that having a needle poked into an already sore nerve in the back of your head HURTS and (2) Maybe it wasn’t so unreasonable for me to be concerned about dizziness earlier. A total of 35 needles later, and I’m sat upright on the edge of the table when the nurse practitioner asks me to rate my pain on a scale of 0 to 10. And I can’t do it.

I cannot locate any pain.

Of course, I’m dizzy and I feel numb and tingly and like there is a bunch of pressure in my head and I cannot think straight, but I cannot locate my pain. I walk out of the building, thinking that I really should have brought someone with me because I cannot walk in a straight line to save my life because of how dizzy I am. I get to the parking lot when it finally hits me.

They did it!!!

All the YEARS of pain, doctors appointments, hospital visits, and crying in the ER and Urgent Care and I am finally here. They have found the problem. I didn’t think I was capable of it, but I began to cry tears of joy. And they won’t stop! I cry the whole drive home.

It lasts for about 4 hours before another migraine hits me. Throbbing, intense pain in the front of my forehead and behind my eyes. But I am still happy. Something happened. I am not sure what yet. And now I have a bunch of new questions for my appointment next month.

Are these nerves really the problem? Is it a combination of things? Do I need to still be on this medication? What does this mean for the future of my treatment?

I don’t want to get my hopes up too high. But I haven’t had hope in a very very long time. And I don’t know what to do with myself.

This past Thursday (March 24th) I had my second round of Botox treatment for migraine!! All 31 shots this time, about 9 months after my “trial” round. It’s too early to feel any benefit.

What I’m dealing with right now is a whole bunch of side effects from the injection sites.

These are the basic injection sites, a total of 31 injections.

The injections themselves wasn’t too bad, at least this time I didn’t feel like I was going to pass out! But let me tell you, those spots on the side of the head, above the ear, and the very top of the neck, HURT. Now I’m feeling some tenderness in my scalp at the sites. Brushing my hair pulls on them and it hurts! Which is unusual for me because I have never been “tender headed” as my hairdresser puts it. My forehead just feels weird and I hate it.

It’s an unusual process because you can actually hear the needle when it penetrates the skin and feel the cold medicine be pushed in.

Maybe in 2 weeks I will have an update for any relief I am getting. Temporarily I have decided to keep a headache journal again. I am already scheduled for more injections in 3 months, but if I want any after that, I have to beg my insurance and prove that it helps significantly.

Yesterday I had DHE infusions at Johns Hopkins. It was ROUGH to say the least.

Less than thrilled I spent 3.5 hours like this.

The protocol went like this: Saline solution, Solumedrol (steroid), Reglan (anti-nausea), Benadryl, Magnesium, DHE 2x, Depacon (seizure medicine), and a shot of Thorazine (antipsychotic). The first couple medicines gave me such anxiety, and restlessness, I thought I was going to have a panic attack! It was such a weird feeling because it was mostly in my legs. Like my legs had anxiety? I couldn’t let them sit still for more than a few seconds because they just HAD to move. I felt like something terrible would happen if I didn’t move my legs. That alone, almost made me lose my mind.

The rest of the infusion went fine, it took about 3 hours. No other weird side effects, but no pain relief either. The Thorazine shot HURT though. It burned like hell going in, and now my arm is sore.

I was very impressed by the lady who set up my IV! Most people can never find a good vein in my left arm, but she was able to on the first try! And I barely have a bruise.

Barely a bruise!

After the infusions I was very sleepy. I felt almost like I was sleepwalking; tripping over things and running into the wall. It was a little like being drunk. And every time I stood up, instead of getting dizzy and tunnel-vision like I was about to pass out (which is now normal for me), I felt this wave of warmth inside my head. It would come from the sides of my vision, usually where my tunnel vision would start, but it just felt warm. It was the oddest feeling.

I had a good day until about 1pm today. I am not sure if that is from the DHE or normal for me. I’m not sure if I would do the infusion again, that anxiety part in the beginning was horrible and it was making me cry. Still waiting on JH to get back to me on more Botox treatments, and the Wilmer Eye Center to call me about my blind spots.

Since I was at the Johns Hopkins Headache Center, my new neurologist has put me on two new medications. I really had hope with him (and I still do!). I am still impressed with how he recognized my visual snow is not an aura.

My first medicine, is a preventative called Effexor (Venlaflaxine). He described it as a “mood” drug, and it is an antidepressant in the SSNRI group. I don’t mind antidepressants if they would help with my migraine, but I think I keep getting put on them because I cry uncontrollably during my appointments. But it is hard to not get upset when you realize you are no longer in control of your life! My migraines tell me when I can sleep, eat, socialize.. everything.

So far I have noticed no effect from the Effexor besides the side effects. I can’t say I am surprised! My appetite is GONE and I don’t even want to eat anymore; I get the dry mouth which I HATE, and then there are the sleep problems! I have never once in my life had trouble sleeping until now. I was such a good sleeper and slept too much actually! And now I wake up every few hours and toss and turn and it’s too hot or too cold or just not comfortable and I’m wide awake. Sleep is one of my triggers as well, so if anything this has made my migraines worse! I’m averaging about an 8 on the pain scale this week.

My second medicine is a rescue medicine called Migranal (Dihydroergotamine Mesylate, or DHE) and it’s a nasal spray:

YESSS mess my blood vessels up!

So far I have tried to use it 3 times and no effect. I have 5 more boxes of it until I can say it completely doesn’t work I guess. It’s weird because I can feel it just sitting in my nose and I have to wait for it all to absorb in. Really not my favorite way to take a medicine, but if it worked I would deal with it!

So I’m pretty much back at square one in terms of relief. I try to not take OTC medicines, but I need to be able to function somewhat at work. I need to get more Botox scheduled this month, but JH takes forever to call me back! If at all. Please call me so I can have needles stuck in my head again!

This past Wednesday, September 23rd, I had my first appointment at the Johns Hopkins Headache Center. I had been waiting for this appointment for months! Way back in May I called and was put on a 6 month waiting list. I had all my records faxed in, filled out the 20 some page questionnaire and I was approved to see Dr Rosenberg.

He was a very nice man, and he really knew what he was talking about, which made me happier than anything! He is the first doctor I have seen that has recognized that visual snow and migraine aura are two different disorders (THANK YOU!!!).

And then he told me that my visual snow might have been caused by the topirimate that my first neurologist put me on originally. And now I don’t know how to feel. Because suddenly that makes sense.

Visual snow comes with other symptoms, like tinnitus, seeing trails, and persistent after images. The very first time I ever remember seeing my “double vision” or what is probably trails in this case, I was standing in my kitchen, and noticed that there was a second, slightly see through chair right next to the chair I was looking at. I did a double take, and of course there is only one chair there. I shrugged it off, thinking my eyes must be tired or something. I reread the pamphlet I got from the pharmacy, and one of the side effects is double vision. I thought it was just a normal side effect of the medication. Fast forward a few months and I have full on visual snow and tinnitus to go along with my double vision and trails.

Dr Rosenberg puts me on what he calls a fairly aggressive treatment plan. I am prescribed Venlaflaxine (Effexor) as a preventative and DHE nasal spray as a rescue medication. I will be scheduled in October for a 2nd round of Botox injections and I have a whole long list of vitamins and supplements to research and try. And I have to get my sleep normal, which is easier said than done! I would sleep my life away if I could.

The migraine queen finally has a crown!

I also got to try out this cute little TENS unit called a Cefaly. I am not sure how I feel about it treating my migraines, but it felt like a wonderful head massage!! It made the whole top part of my head tingle, which is a much better feeling than pain!! I kinda of wished it did something for the back of my head/neck/shoulders since that is where I get a lot of my pain too. It costs $350 and insurance doesn’t cover it. I’m not yet sure if I want to spend the money.

Although I don’t have much hope in my treatment plan, I feel like finally I am in the right hands. If anyone can figure me out, it has to be the Headache Center!